My sister (56) was just diagnosed with cancer of the tongue. Her doctor (GP) told her that she would need to have half her tongue removed and then have chemotherapy. She decided that she would try and pursue alternative therapies first (she went to a clinic in Mexico where they recommended a special diet). I would like to persuade her to consider the surgery, but she’s pretty freaked out by the idea of having part of her tongue removed (it’s also complicated by the fact that she doesn’t have health insurance). She doesn’t really use computers very much, so I can’t suggest she posts here herself.

What I would like is to find a support group/someone who has had the surgery that I could put her in contact with - she’s in Utah & I haven’t found anything local there.

She likely needs to see an ENT who specializes in oral cancer. A GP just doesn't have the experience or knowledge to handle her concerns.

You will find plenty of members here who have gone through this surgery; sadly you will have to be the point of communication with this forum and then get the info to her. Do you think she will listen to you?

Get on the internet and start looking for a comprehensive cancer center (CCC). They are the experts in the field that she needs right now.

Good luck

P.S. I can see you are in the same state as me. I don't think there are any CCC in this state. I know MD Anderson in Houston is considered perhaps one of the best in the country. I suspect Dallas has at least one CCC also. Yes, it will be more trouble to go out of town for a CCC, but many of them have affordable housing available for patients going through treatment.

I think Harold C Simmons center at UT Southwestern in Dallas is a CCC. Look them up.

Kevin, welcome to OCF! If anyone needed our group, you and your sister do!!!

Im going to be brutally honest with you and hope you understand this info is given out of caring. Anyone who has attempted to choose alternative treatments for oral cancer has passed away or on the road to doing so. This is NOT the type of cancer to fool around with! It can be very fast moving, checking out all kinds of "alternative" treatments could cause delays making her chances of survival slim. The only scientifically proven ways to eliminate oral cancer are thru surgery or radiation with or without chemo. This type of cancer is so strong that even chemo alone wont completely kill it.

The clinics in Mexico are there to steal patients money. Its all a big racket with treatments not proven to succeed. PLEASE tell her to avoid these types of things like the plague. If your sister wont believe me then all she has to do is type in Mexican cancer clinics in the search bar of Quackwatch and find out for herself what those places are for. The clinics in Mexico or other countries are often just money making schemes. PLEASE print this out and give to your sister!!!

Quackwatch... Mexican Clinics

If your sister would like to speak with someone over the phone I talk to patients and caregivers all the time. Ive been doing it for several years speaking to hundreds of patients and caregivers. I will send you my info thru our private message system (PM).

Even if your sister isnt used to working on a computer you can still help her by printing out replies and giving them to her.

Best wishes!!!


PS... Hers a list of CCCs for anyone who needs it. You can search by state. Many hospitals will do charity work for un/underinsured patients. You have to ask whats available.

CCCs by state

Christine:

I agree about the clinics in Mexico. It seems almost criminal to give false hope to people, especially when any delay can have serious consequences. I've contacted Huntsman Cancer Institute in Utah & I'm hoping to find someone local to give her some counseling/advice.

I don't know if she'll listen to me, but I still feel like I should make every effort possible.

I'm going to try & talk with her daughter & our Mom - perhaps all of us together will have some influence. I think talking with someone who has actually been through the experience (if we can talk her into it) would be very helpful.

Thanks for you time,

Kevin

Wow, I can't help with your questions, but your sister's situation makes me thankful for mine. I can't imagine having part of your tongue removed, so I understand her concern. I had a tumor removed from my soft palate and while the treatments are no cake walk, at least I'm not faced with such a long term ordeal as your sisters. I hope you find some answers and support here.

I did not need chemotherapy but I did have about 1/3 of my tongue taken out as well as a portion of the floor of my mouth. They thought I would need chemo and radiation and turns out the margins were clear. The neck dissection showed no node involvement. You can tell your sister it was no where near as bad as I thought it would be. (I had 1/3 removed, not 1/2). I totally relate to the not even wanting to think about it! Tongue removed?? Oh my gosh, I couldn't believe it was happening to me. But it did and I had to deal with it. Thank God I did, and now a year later I am still going for monthly checks but it beats the heck out of the alternative! I hope you can convince her to see an ENT before things get out of hand! Good luck to you and your family. Denise

I had just over half of my tongue removed, plus radiation and chemo, but am 4.5 years out now and doing great! Although I have a small speech impediment, I am alive and really can't complain. I have a very successful career as a manager at a consulting firm, and really my surgery has not held me back at all. I traveled to MD Anderson for my surgery. I would be happy to speak with your sister - please send me a PM if she is interested in talking to me and I can provide my contact information.

Emily:

I'll PM you - I think your experience would be really relevant - the "removing half your tongue" is probably the really terrifying part for her right now. I can't guarantee that she would be willing to consider treatment, but if I have your contact info, I could attempt to pass that along.

Kevin